Support we give
Here are some of the ways that we provide support to the hypermobile community - whatever the individual diagnosis.
Patient membership (available for individuals or families) provides an opportunity for interacting with and learning from other people who know what life with hypermobility and the various possible linked conditions is like. A safe space where you can ask any questions you need to, and which can support your journey to living well with hypermobililty syndromes, while also ensuring you are always updated on new and existing information on hypermobility syndromes.
We are able to provide additional support to our members including:
- Local groups for peer support (moderated by experienced and trained volunteers)
- Livestreaming sessions with an Occupational Therapist
All contributing towards the validation, education, and support which are so vital for learning to live well with a hypermobility syndrome.
With an average gap between onset of symptoms and diagnose somewhere between 10 and 15 years, raising awareness both with the general pubic and health and social care is an essential part of our work.
Part of supporting hypermobile people is improving access to HMS-aware health and social care professionals. We do this through professional education and professional membership, and we also provide advice and answer individual questions from professionals via email.
On our website you will find a mine of information both about what hypermobility is, how it is diagnosed, and what can help us to live well with it.
In addition we have various publications about living with hypermobility - all drawing from both the lived experience of our volunteers and community and the medical expertise of our medical advisory board.
Social media support
We are active on LinkedIn, Facebook, Twitter, and Instagram. Our work on social media includes educating and supporting hypermobile people, their family members, and health and social care professionals.
The private message facilities on these platforms also enable us to provide a huge amount of vital support and guidance - especially to people searching for a diagnosis, or newly diagnosed and trying to understand it.
"After finally getting my diagnosis and finding this group every post is spot on and every time I see a post I think of all the years I felt alone and now I completely found the community of people that have been through similar or the same experiences that I have. I am so thankful for all of you."
Anyone can call our helpline, (0)33 3011 6388 or email us on email@example.com for support and advice on any aspect of living with hypermobility. Our helpline is manned by volunteers who live with the syndrome themselves, which means that the person you speak to will truly understand.
Patient-centred events, both social and educational are an important element of the support we offer - there is nothing quite like finding yourself surrounded by people who understand your challenges, and who can help you find ways of doing things that will work for you.